Jane Krakowski opens up about losing her father to dementia: 'We have to disrupt dementia'


Jane Krakowski lost her father to early-onset dementia after a long, difficult battle that left her family heartbroken, but now the "Unbreakable Kimmy Schmidt" star is turning that heartbreak into action.

The actress recently shared her family's story in conjunction with AARP's announcement that it is investing $60 million to fund more research for dementia and Alzheimer's, for which there is no known cure, in an effort to spark conversation around a disease that affects tens of millions of Americans.

The former "30 Rock" star recently caught up with AOL's Gibson Johns to share details about her father's difficult battle, reveal how his diagnosis affected the rest of her family and share her lasting memories with her father, who shared her same infectious sense of humor and love of performance.

Check out our full conversation with Jane Krakowski below:

You've had long day of press talking about losing your father to dementia, which is surely difficult to open up about. Talk to me about your decision to share your family's story now.

Obviously it was a major event that affected my family personally, and I was thrilled to hear that AARP, along with United Health Fund and Quest, were making such a large investment into research, as well as learning that the Bill Gates Foundation is giving $100 million more. That’s $175 million in one day, which is incredible. For my family and for all families that are either going through this or have been through this, the research is so needed. Progress has to be made. That’s one of the things that my family struggled with a lot -- the lack of information and lack of medicine and lack of a cure. I felt with the permission of the rest of the family that I wanted to talk about it in a way to honor my father. We all felt that it would be wonderful to spread the word, get more attention paid to dementia and have more answers, development and research.

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You were also one of your father's caregivers, which also must've taken its toll in and of itself.

To give credit where credit is due, my mother was his sole caregiver, which was a 24-hour job. She lived in-house with him. I felt like I was an emotional caregiver to both my father and to my mother, as the caregiver. My brother felt that way too. The entire family needs to support the whole thing. Everyone has to chip in, but my mother was an amazingly strong caregiver for my father. She did an amazing job being that needed person.

Last year, I interviewed Marcia Gay Harden about her mother's struggle with Alzheimer's Disease, and she talked about the diagnosis process and how her family started to notice signs that her mother was struggling. What was the diagnosis process? How did your family start to notice your father was struggling?

He actually was the first person to notice that he was not the same and that something was happening to him, which you hear from many of the patients who are diagnosed. He was diagnosed with early-onset dementia, so he had it for a very long time. In the beginning, he was mostly functioning as he normally did -- there were just certain things that weren’t retained or that were harder for him to do. Throughout the years, the decline was huge. What I found interesting -- that I didn’t know -- is that the drop-offs with the dementia are large. It’s not a slow hill; it’s cliffs that you drop off each time. I was also very surprised that he was aware when those declines would happen. In many ways, I was surprised by that and almost hoped he didn’t know, because as the process goes on and on it got harder and harder. For him to be aware of his limitations brought greater fear to him and greater sadness to us.

The takeaway I came away with, which is part of why I wanted to participate today, was how little information we were able to get to help my father. I’m not saying [that we didn't have] emotional support. But meaning that we would go from doctor to doctor who would say, "This is all I have for you. There’s nothing else out there." There was never enough to keep him with us throughout the whole process. That’s why I felt motivated today, because we do have to disrupt dementia. We have to find more answers and more cures. It’s afflicting so many people, so you’d think there would be more attention paid to it already, but there’s not. I hope the next generation -- and possibly before then --doesn’t have to go through this.

By stepping up and sharing your family's story, you're really going to help make a positive change. Have you always wanted to use your platform for good?

You’re always aware that some people would listen. I never thought it would be this [cause], to be honest with you, but I also didn’t think this would ever affect my family. I feel passionate about so many things that are out there in the world that need cures, but because AARP had this moment and this investment and they want to have this movement to disrupt dementia, it also came at a time when I felt we had just lived through this and was able to speak to it. I felt, yes, this is something I want to speak about purely on the staggering numbers: 60 million [people] just in America alone!

On the "Today" show, you talked about your dad's love of performance and his incredible humor. Surely you got some of that performative quality from him!

I feel like I got a lot of the performance talent from my dad and certainly the sense of humor, because my father had an incredibly smart and witty sense of humor. I still strive to get there. My mother, I got a lot of the gumption and the moxie from. She’s very adventurous. My father was a bit more safe of a man, but he was a deep thinker, so I always admired that very much. We shared so many things. The thing that I thought was interesting was that my father always used his mind. We always think that if you just do mind exercises, you might just be afflicted with this; my father taught himself guitar and piano and magic. That’s why it surprised us that my dad was diagnosed with this, because he always had these extracurriculars that stimulated his mind throughout his life. It’s hard to learn magic!

One of the memories that sticks out a lot is that it was on his bucket list to perform in Greenwich Village and just put the hat out, so when I was 12-years-old we came into Manhattan and we did magic tricks, and I looked out for the cops. He made like 90 dollars, and I thought it was major. [Laughs] I have so many endless, great memories of my dad and the things that we shared.

Lastly, I just need to tell you that I've watched your story about your son on "Late Night With Seth Meyers" like 100 times. He must have also gotten that family performance gene, too?!

I think he did. I don’t know if he has the need for applause that many performers do, but he likes the hamminess of performing and the costume wearing and all of that. That was hilarious. When he said that, I literally like fell over. He’s perfectly my son!

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